I Was There

In my experience, when you have lupus, you don't often get to say "I was there". You hear about events after the fact. You are the one who can't volunteer in advance because you don't know if you will wake up healthy on the appointed day, or if your swollen knee will allow you to walk the required distance, or if your energy will abandon you midway through the event. So while everyone else is racking up experiences, you are hearing about them second-hand.

Yesterday the President came to Chattanooga. THE President. Of the United States. And I was there. 

I had slept crazily-a long nap the night before, then awake working from 1 to 5 in the morning. My sister called me at 7:30 a.m. waking me from my early morning rest and told me "they" were meeting before 9 a.m. in a mall parking lot to volunteer for the Obama visit. I asked no questions. I showered, dressed and left, pulling on a ball cap as I hurried out the front door. A 12-pack of waters sat in my passenger seat from the previous day's shopping. Good, I was ready. 

At the parking lot were organizers from Organizing for Action (formerly Organizing for America). We signed in and were given signs and instructions. My group headed for the industrial complex to station ourselves outside the plant where the President was speaking. I arrived, meandered a bit, and found parking in an undesignated but unblocked street. We posted ourselves at the edge of a large traffic circle directly in front of the plant and settled in to wait. The sister who had wakened me called others to recruit bodies. Most people were excited at the prospect, and eventually joined us, including two more of my sisters. It was the first time the four of us had been together in a couple of years.

As the crowd grew, it was evident that most of us were Obama supporters, although there were many who didn't voice an allegiance but were there because it was an event worth celebrating. The negative voices were a tiny minority in the area where I waited. I met many people, from a 6 month old baby to an older man with an "Old White Guys for Obama" sign. The folks were from as far away as two hundred miles, and many were from places where I know they are in the extreme minority with their progressive views. We exchanged stories about everything from shopping to living in our respective political environments. 

The wait quickly grew long and hot. We had arrived knowing that we had at least a three hour wait ahead. Some were very prepared, with coolers and lawn chairs and umbrellas. Others were like me-startled out of bed, rushing to make the event with no time for planning. I was happy for my hat. I had grabbed two waters as I left my car, and had my phone and ID in my pocket. People shared what they had. A young boy passed a hat full of hard candy. A group with a case of water, a man with an umbrella, a few folks with extra chairs, people with live coverage on their phones-all these were shared by their owners to make the wait of others easier. People helped to entertain one another's children and my sisters braided the hair of a young woman who was miserably hot. Occasionally the enthusiasm would bubble over into a chant or song or someone would dance a little. Energy remained high.

Mid-morning a group of young men carrying a huge sign, probably 10 x 12 feet, arrived on our stretch of sidewalk. People strolled down to look at the sign and came back agitated. It was rudely anti-Obama, including a naked caricature of the President. When I went down to look at it, all I could think was that the young men were so young. Three looked like they could barely be 20. A fourth hid a young face behind a huge, bristly beard and might have been all of 30. They were somebody's children. I told them all "Good morning", asked if they had water and felt okay in the hot sun. All answered politely. I made no attempt to discuss politics. I just wanted to make eye contact and share some peace.

In the end, the President was whisked in through the back entrance of the plant without us seeing him. I had watched the live feed as his motorcade approached on the interstate, and my excitement at the proximity of him was not dampened. I'm sure that he knew we were there, that Chattanooga had pulled on its big girl panties and showed up for a civil, warm welcome when it mattered. 

Peace.

Back Porch Vacation

I woke this morning feeling mellow. I poured my coffee and took it out on the back porch. There I sat, barefoot, in my long black shirt, rocking in a porch chair. I watched Lu make a circuit - up the little hill, along the back fence through the bushes, down the hill by the neighbors' fence, sniffing her way along the perimeter.

I called my baby sister. "I'm on vacation." I could hear her thinking: "Vacation? And she was too broke to make it to family reunion two weeks ago?" I explained my excursion to the porch. "Oh." She was not impressed. In my mind, however, that tiny excursion was a magical journey.

I selected this house to be my "retirement home". Moreover, I chose it to be my sanctuary. It is small, built around a central room that is my lounge, office, entertaining space and kitchen. I feel the walls of this house enclosing me, making a cocoon but in a safe, cozy way, not as a jail, not claustrophobic.

My daughter has a room here. It is in use very seldom this year-less than six weeks. But for her piles of possessions and art supplies, it could be a guest room. There is one more bedroom. In my mind, it is a room of possibilities. It contains the miscellaneous craft supplies, printer, unfinished knitting projects that I haven't yet relegated to organized, efficient storage. But it also has a bed, a desk, a usable closet-the basics of personal space for an as yet unseen visitor or even a permanent companion. The possibilities room.

Here on my couch, I am surrounded by the things that make my life livable-art, books, yarn. A full rack of knives, two crockpots, fruit on the kitchen counters, with a canister of anti-bacterial wipes. Old, broken-in furniture. Homemade curtains. Peace. Perfect peace.

Peace!

Making Fun in Bad Times

Just now I wrote four paragraphs and accidentally hit an unknown key and it disappeared. That's the theme of the past two months-put in a lot of effort for nothing. I took two chemo treatments that didn't work and had side effects; I put time and attention into a man who clams up under pressure; I began exercising only to find that a flare made it impossible; I prepared a pile of beautiful baby room accessories and clothing and cannot begin the market on time (you can see examples below).

I am in limbo, fighting a flare without specific meds for it. I rarely leave the house due to pain and lack of energy and frequent infection. I can't start the market with my comrades next Sunday. I have prepared and prepared and I can't carry on until something ends this.

I'm still coming to terms with the rituximab failure. Four years ago, that medicine was like a miracle. In a lot of ways it liberated me, making me healthy enough to get out of the house, be with friends and family, build a market business instead of just existing on the internet. Now, one bad treatment cycle and my doctor has stopped it. The next medication choice leads us into uncharted territory.

Today I recognized that creeping self-pity and overwhelming sadness and chose some activities to fight it. I re-read Knit 2 Together, Patterns and Stories for Serious Knitting Fun. Tracey Ullman and Mel Clark put some unusual patterns and fun narrative together, and they seem better and more useful to me now that the first time I read it. I have lots more knitting knowledge and experience and more appreciation for elegant construction and a sense of design humor.

I also pulled out a box of Seinfeld dvds, and I'm going to work my way through several seasons. It is perfect for a knitting accompaniment. There's no action for me to look up and follow. Conversation is the whole show-what happened or didn't happen or should have happened, nothing too banal or trivial to discuss. In my family, where each one's opinion is too important to keep to oneself, this sounds very familiar, and the show makes me laugh like a crazy person.

I have a crockpot of my favorite flageolet beans. Interesting food is more important when you eat alone at home day after day. It's a cheap luxury and one of the few ways I can impact my disease right now.

I've promised myself to keep writing when things are bad. This account should always be about the totality of having this damn disease, not just the triumphal moments.

Peace.

Slavery Knitting Heritage

Yesterday I picked up a book that's been on my shelf for a long time and began to read. Mighty Rough Times, I Tell You, edited by Andrea Sutcliffe, is a compilation of narratives by former slaves. In the 1920s and 1930s there were a couple of projects designed to get first-hand accounts of slave life by interviewing former slaves who were at least 10 years old by the time of the Civil War. The aim was to record the responses to a standard questionnaire and amass a bank of information from those who knew the institution of slavery best. This could be compared to the Worldwide Shoah Memoirs Collection of Holocaust survivors narratives.

The narratives in Mighty Rough Times, I Tell You were obtained from slaves who resided in Tennessee, and they feel pretty close to home as I read names of towns and rivers that are thoroughly familiar. Tennessee was initially an abolitionist state, and even after 1830 slavery did not exist to the extent that it did in other southern states. That didn't make it any more palatable or less cruel, as the individuals in this book describe.

Early in the book, a woman named Precilla Gray is interviewed. She was raised in Williamson County and passed around to several members of the same family. Describing her first "mistress":   "My first mistress had three looms and we had to make clothes for everyone...I was taught to weave, card, spin, and knit..." as well as to do rough field work. Under Missus Snythia, "soon as the chillun was seven years old, they started them knitting...We wore yarn hoods, shawls, and pantalets, which was knit things that come from your shoe tops to above your knees...When the Civil War was starting...I had to knit socks and helps make soldiers' coats."

I picked this book with the grudging feeling that I was getting into something that would be completely unpleasant. It is exciting to find this knitting connection and bits of information about what African-Americans in slavery times were knitting. For instance, who knew that leg warmers (pantalets) were around before the 1970s made them popular outside the ballet world. I have peeked ahead (yes, I know!) and I see the word knitting coming up again. The piece of my past history that began with slavery has some dreadful, evil, inhuman detritus, but it also has knitting!

Peace.

Finding a Stitch Pattern : Neglected Post from January

I love how things lump together in life. They don't necessarily occur in threes, but if I read an article about sea turtles this week, a friend will mention a documentary or participation in a rescue next week, and maybe I'll find one in my bathtub, too. That happened this week with a stitch pattern.

When people talk about knitting, they tell you that you just need to learn two stitches-knit and purl. What they don't mention is that there seems to be an infinite way to put those together to form fabric that functions and looks different. I am knitting an infinity scarf from Noro Cash Iroha, a lovely yarn with the following fiber composition: 40% silk, 30% lamb's wool, 20% cashmere, and 10% nylon. While wool and nylon are fairly elastic fibers, the other two have very, very little. I don't want this scarf to be saggy-it needs to drape, but not hang flaccid-so I'm choosing a stitch pattern that will add its own elasticity. This is a custom order and I cannot spend an infinite time (an infinity scarf is knit in a ring so that it has no ends; the name doesn't come from how long it takes to knit) constructing it. Cabling is attractive, classic  and elastic, but takes pretty good time and effort, so I'm going to make faux cables. Faux cables have no real crossing but give the illusion of it. There is a faux cable I used once that I love. It has a pretty, rounded appearance with a little eyelet in the middle. I have looked on and off for this pattern without success. Yesterday I found something close to this in my handy stitch pattern book, but it wasn't exactly what I wanted and when I began to knit a swatch, the book instructions were wrong. I corrected the instructions and made a nice swatch, deciding this was an acceptable pattern to use.

That should be the end of the story. Today, a free pattern offer led me into the Tahki yarn website, and as I scanned several pages of freebies, a sweater appeared with the pattern of faux cables I love. I quickly downloaded the pattern, and it is working beautifully in the swatch I'm knitting.

It is rare that I reveal my true knitting geekiness, but there it is. Stitches matter.

I held onto this post with the intention of adding a photo of the finished product. My photo isn't great, but you see it.  The scarf is long since delivered, and I had forgotten this draft.

Peace.

Tricky Immunosuppression: Body Maintenance Work

In this new year, things must change. Last year I worried nonstop and worked frenetically on my few available fronts to stem the political tide of venom and ignorance in this country. This year, I am backing away from politics. I want younger people to see the light and feel the atmosphere and take up the standard. I am going to work on myself.  The results are more satisfying.

I'm sure my usual optimistic, cheery demeanor fools many into thinking lupus is like hypertension-take your medication, eat right and exercise, and it's all under control. Last week I took my semi-annual treatment of the B-cell killer. Two days later, after a normal morning preparing breakfast and caring for dog, fatigue hit me and curtailed all my weekend plans. Today I am dealing with a skin infection that developed in a matter of hours from normal skin to a bright red, oozing, malodorous expanse that will require special care for days. I feel like a leper. Does hypertension ever make anyone feel like a leper?

Matters of the immune system are tricky. If medicine is suppressing its function, infections begin with little warning and progress quickly to far beyond what is normal in a non-compromised system. The infection I have would ordinarily be a little itchy redness, not the awful mess that I described. I wouldn't have to pull out all the stops to treat it and prevent it from spreading-my body would handle it for me with minimal help.

Sometimes I tire of being the maintenance crew for this damaged body. I stay away from people when I feel like this. I don't want to hear them talk about the difficulty of finding the right gold dress or how long it took for their plane to arrive. I don't want them to look in my eyes and see that faint suicidal longing that I will not indulge but cannot escape. Yesterday I heard someone close say "I feel like I'm in exile." She thought it was because she was not where she wanted to be, but it is because she is not who she expected to be. I get that.

Peace.

Countdown to 2013

2013 is hours away and I am excited. The total toll of 2012 was rough, but it left me with two things: improved physical condition, and a better heart.

Back in the spring, an $11 per month gym caught my attention. Just five minutes from my house and open 24 hours per day, every day of the year, it overcame all of my barriers to exercise.  When I began I chose a few minutes on the treadmill and a few strength-building weight machines.  I gradually worked up to 20-30 minutes on either the treadmill or recumbent bike, and a regular sequence of upper and lower body weight machines. It only took a month of twice weekly visits for me to notice an increase in leg strength.  My endurance increased rapidly, too. I had to stop for a while in late summer and early fall due to a series of skin Candida infections, but I didn't lose the benefits. As I finish the year, I can climb stairs using both legs without relying on the handrail, I can go down stairs without a rail to check my balance, and I get off the floor much more easily.

This conditioning was the basis for my ability to work more frequently at the market. It takes strength and endurance to load and unload, set up and take down all the equipment to make my store each week. In the past I could only do it with a significant amount of help. Now I can go to market alone and handle all my equipment, and a day of working in my store doesn't make me take to my bed for the next three days.

It still remains that my illness can crop up at any minute and change my plans and keep me down for weeks, but it doesn't deplete my strength to the point that I must start from scratch and feel so disabled for so long.

The other benefits are probably obvious - I can get out more with friends, do household chores and run errands, and the additional strength is a confidence builder.

This other thing-the better heart-is a trickier concept. First, let me say that I don't believe that "What does not kill me, makes me stronger".  I don't know what Nietzsche was talking about, but I rarely see anyone who damn near died feeling stronger, at least not for a long time. So I don't mean that the crap we were mired in this year left me a stronger person. Instead, the ring of loving people around me helped to protect me from the pervasive crap, and with that protection, I was allowed to grow and do some good and not sink into the mire. Having that special ring of friends and family is a palpable thing for me-in my mind I can feel their love and support, and I know they wish me well. They buoy my daughter and me, share their own strength and heart, so I am not depleted. God is also there, making us all better than the molecules that form our flesh. She infuses us with the desire to stay alive and make life count, to stay connected and be part of that caring circle, feeling and supporting and giving, communing, and altogether radiating something lighter and better.

2013 is for that lighter, better thing. Peace.